NCRI launches template for sharing research data and samples

Jun 21 2009

The National Cancer Research Institute (NCRI) has launched a broad policy template on sharing research data and biological samples, which will help to streamline the governance requirements for biomedical research which uses such resources.

Working in partnership with the National Cancer Intelligence Network (NCIN) and onCore UK, the NCRI have produced a "how-to" guide for custodians of databases and biobanks to assist them in developing their own policies for deciding on how to grant other researchers access to important research resources they hold.

The template will help them to ensure that their data and sample sharing policies are legal, ethical and effective.

Reducing unnecessary duplication of data and sample collection by sharing more effectively will help to ensure that public money and charitable funds are used in the most efficient way, and it will speed up research to benefit patients.

Professor Sir Kenneth Calman, chair of the NCRI, said: "The creation of an access policy can be daunting; it is often easier to say no to sharing, and avoid the difficulty, than to venture to say yes. But there is a great deal to be gained if we can all say yes more often."

The guide will also help to ensure that researchers seek informed consent when collecting data and samples, so that they can be securely shared with other researchers at a later date, if desired.

Mr David Ardron, chair of the NCRI Consumer Liaison Group, which brings together people who have been affected by cancer to consult with cancer organisations on research issues, said: "When we ask them, cancer patients are often surprised or even dismayed by how little use we make of their samples and information. Where patients agree to it, we have an ethical duty to generate the most knowledge possible from the data and samples they provide."

The template is written so that each organisation can adopt or adapt points that are relevant to their circumstances, ensuring that any policy developed, reflects best practice in a consistent manner.

Although organisations can modify the terms in the template to suit their needs, greater consistency between access policies will help to encourage researchers to share samples and data with the confidence that they do so in a way that is consistent with regulatory requirements.

Mr Chris Carrigan, head of the NCIN, said "The goal of this document is to enable the responsible sharing of data and samples for the benefit of all: patients, the public and researchers."

Dr Brian Clark, chief executive of onCore UK, said: "This template will be a very welcome tool for those running biobanks. It has helped onCore UK develop its own Access Policy and will be useful when advising others in the field to develop or revise their own policies. It is clearly written, easy to use and authoritatively deals with the issues that must be considered when providing access to samples and data. Furthermore, having been prepared after wide consultation it reflects a broad consensus of opinion and current best practice."

The NCRI are looking for organisations to pilot use of the template and give feedback on it, so that it can be improved in the light of experience. It will also be updated in response to any regulatory changes.

To obtain a copy of the template, click here.